Developing Data, Tracking Progress

Developing Data, Tracking Progress

How can we measure progress in Alzheimer’s research recruitment?

As the Alzheimer's research community explores and implements enhanced strategies for recruitment, how can we develop consolidated and localized data on recruitment for Alzheimer's studies, track progress in recruitment and retention of study participants, and tailor strategies based on that data?

Ideas in this area might address:

  • Meaningful measures of community engagement
  • Approaches to measuring return on investment (ROI)
  • Indicators of effectiveness for recruitment strategies
  • Recruitment data sharing and harmonization

Developing Data, Tracking Progress

Submitted by (@lfrank2446)

Find Peoples strengths first and develop testing around them

So many Alz tests include spatial items-which I already stink at. Hopefully tests can be developed utilizing a person's know strengtihs...maybe someone is a sports nut who knows all the baseball stats - test them now and then continue to test to see if they lose knowlege in an area they are good in now. I would do good in verbal and possibly math but am already terrible at spatial ideas and remembering things like ...more »

Voting

6 votes

Developing Data, Tracking Progress

Submitted by (@rasmith)

An App!

Develop an app and in addition to the traditional TrialMatch offering, create a platform for lifestyle tracking for all ages. This can be a passive feature (not related to a current research trial). The benefits of this are vast: - It would provide a public health-related service (tracker for food/exercise/mood/lifestyle, etc.) - Would create a much more engaged participation base - Would amass data (with user consent, ...more »

Voting

11 votes

Developing Data, Tracking Progress

Submitted by (@adsmola)

All in the Family, the early years

I have been with TrialMatch for Alzheimer's Association for years and the biggest thing I keep getting a road block. Clinical studies are showing that hereditary Alzheimer's may start as early as 20 years prior diagnosis. With my family history, we are looking at the ripe age of 42 and I am willing to be tested but there is nothing out there. I am going to be 41 and now is the time to start collecting data and seeing ...more »

Voting

24 votes

Developing Data, Tracking Progress

Submitted by (@pwlockwood)

Followup

I was a subject in a commercial drug trial performed by a local university to determine the effectiveness of a new drug proposed for potential Alzheimer's patients. They collected a large amount of data over a period of 18 months. This data was archived and could be made available for future studies. I also could be available for further study in conjunction with the previous data.

Voting

11 votes

Developing Data, Tracking Progress

Submitted by

Encourage more collaboration efforts between various research groups.

There are no trials in my area, so Trial-Match directed me to online studies. I have participated in all that I could - 3 or 4. They all ask for some medical history and lifestyle (diet, sleep, exercise, smoking) information, and then I complete memory tests. I have noticed that between studies they don't all ask for the same information regarding medical history or lifestyle. Since these are so important to disease ...more »

Voting

20 votes

Developing Data, Tracking Progress

Submitted by (@renvan)

Start collecting data of family groups with dementia in the family

My Mother was diagnosed with dementia 7 years ago. Her mother had dementia as did all her mother's 10 siblings. My Grandfather on my paternal side had dementia. I was 31 years old when my Mother was diagnosed and started looking for a study that wanted to look at younger people who didn't show signs of dementia, but had a history of dementia in their family, but I haven't found one yet. I have dementia on my maternal ...more »

Voting

44 votes

Developing Data, Tracking Progress

Submitted by (@kristins09)

Ms

While totally acknowledging the value of information obtained with high dose radiation (PET-CT scans) to brains of asymtomatic people risks associated with this radiation exposure need to be fully addressed.

 

People receiving testing followed for possible consequences of the testing. Compensation down the road for consequences of exposure need to be addressed up front.

Voting

8 votes

Developing Data, Tracking Progress

Submitted by (@grandfamilyplanning)

Creating a Global Community

My colleagues and I are building a community that supports family caregiving, providing education, support and access to providers. Our members will wear health monitoring bands, so their vitals and those of their charges can be monitored, enabling medical professionals to offer guidance in real time. We will also be collecting the data, scrubbed for HIPAA compliance, to researchers to use for development of cures and ...more »

Voting

12 votes

Developing Data, Tracking Progress

Submitted by (@hinckleybob)

Benchmark related prior studies and use the best as a starting point

To be trite, do not reinvent the wheel. I believe studies of a similar nature have been conducted. Inventory them, determine which were most successful at achieving their desired outcome. Cherry pick the best characteristics from the prior studies. Using the prior studies as models, employ the same techniques to qualify and recruit candidates.

Voting

6 votes